Amelia
Amelia had her first seizures at just two months old. Mum, Jamie, shares their story.
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Our stories
Receiving a diagnosis of Dravet Syndrome can be a frightening experience. Its important to remember you are not alone - other families are going through similar experiences. We have gathered together a number of written stories and videos from our Dravet Syndrome UK community. Always remember that, even though their symptoms and experiences may be similar, every child or adult living with Dravet Syndrome is different and can present differently.
Poppy
Poppy, age 19, lives with her Mum Vicki, Dad Karl and sister Lyla. Vicki shares their story.
Etta
Etta’s parents Jo and Lucie describe the path from Etta's first seizure to her Dravet Syndrome diagnosis and how support from Dravet Syndrome UK helps them manage daily life.
Sofia
Sofia had her first seizure at just nine months-old. Her mum, Juste, tells her story.
Zac
Zac had his first seizure at nine months old. Zac's Mum, Karen, shares their story
Elise
Elise is daughter to Stella and Phil and older sister to Jasmine. She lives as a full-time resident on a specialist school/college campus. Stella shares their story.
Hannah
Hannah had her first seizure at 3 months old. Now a young adult, her Mum Kelly, shares more about the challenges they've faced and the transition from children's to adult services.
Finn
Finn had his first seizure at 16 weeks old. Mum, Helen, tells their story.
Lucy
Lucy lives in Supported Independent Living. Mum, Denise, shares their journey.